Jesy Nelson

And then he did a Zoom with us and he said, I am, and from the test results, 95% sure that they've got SMA type 1.

And I said, okay, so now what?

At that point, I was in, I feel like I'd kind of already like got to that point that they had it.

And at this point, my brain was like, well, now we need to just get them the treatment.

So I wasn't really processing the diagnosis.

I was more like, we just need to like now take the steps to get them the treatment.

And how quickly can we do that?

Because they're literally fucking deteriorating in front of us.

um so he said we i'm going to write you this letter and the best thing you can do right now because you you can't take them to great ormond street so he said you need to go to your local hospital and you need to explain to them how severe and like important it is that they look at your babies um and then once they have done their assessment on them then they can refer you to great ormond street and then it's whether great ormond street think this is serious enough so i'm like

You know, when you're just like, you feel so helpless.

So he wrote us the letter.

That night we went to A&E and I just explained the situation.

I showed them the letter and they said, okay, they saw us straight away.

There was no waiting around.

At this point,

we now have to, they've looked at the babies and they've said they're underweight.

They're severely underweight.

Bearing in mind, prior to all of this happening, I'd been taking them to the GP and saying, my babies are not feeding.

They don't take their bottle.

They're crying.